The Neuro Challenge…Can you deliver something useful without Pharma

You said “Neuros need to be more proactive in the area of repurposing drugs. Pharma seems content with their control of the pipe line”.

You like to tease TeamG with these comments, so I decided to put out the comment to challenge our neuro readers, who don’t read the comments 

Are neuros willing to rock the Pharma boat and do something? 
or are they happy to enjoy the status quo and do nothing?
Importantly, we have to ask, Do neuros have the tools to rock the boat even if they wanted to?
As we have said before there is are two ways to repurposing:
The Pharma way  (This works and is the route to most drugs)
The Academic Way (Yet to deliver anything but false dawns)
At ECTRIMS we had a debate and vote on this. Academics won the argument and the majority of the hall were I think deluding themselves to think that neuros can deliver drugs without pharma. 
Where is the evidence in modern history in MS? 
Sure Neuros can do trials and do them very well, but then what?
Shout about it an hope that every one will listen and change will occur.   But what if the regulators don’t listen? Can we bully them until they do?
We are doing a lot of trials, so we have to think of a serious answer.

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  • Some doctors were successfully prescribing Campath for MS before Sanofi pulled it from the market, renamed it Lemtrada and jacked up the price. Doctors also prescribe statin drugs and antvirals for MS patients. These uses are backed by solid research. Then there's CCSVI veinoplasty, which has largely been disproven. Are there other off label drugs or procedures for MS?

    • Ok the mantra will be off label prescribing if you have a nice neuro until pharma come up with something which will mean drug youre on which could be better should not be given in EU.
      I am just trowing so ideas out here becuase the question needs asking. we have MS smart and MS sprint we get two positive then what happens another trial a pat on the back for a positive trial

  • So what does teamG think about the Saatchi bill? Is it a step too far and a 'quack's charter'? Would Mr. Saatchi have been better putting his money and effort into a bill to repurpose already existing drugs than to allow the use of experimental drugs on those who have no hope from available medicine?

  • Ann XTuesday, February 03, 2015 11:00:00 pm

    Well, it probably looks well worth a discussion from the top of the tree, but from the bottom of NHS it all looks a bit different. You can post it or leave just for your own reality checkup. I have a 12 yo daughter. We moved into UK due to my marriage in October 2014. Registered at GP right away which took about 2 weeks. At the middle of October she got her second ON attack (the first one was a year ago).Took child at drop-in centre (ON is not an emergency to disturb A&E, right?) They checked on her tummy (she had (what I believe, MS hug and had been vomiting for several nights in row) for apendicitis and kidney inflamation, and sent us home for GP visit.
    When we finally got to GP, he arranged MRI head scan for MS. It happened on the beginning of January this year, and surprisingly only took about 10 minutes – her previous two MRI scans on head took a bit over an hour, but – who knows – maybe there is a new MS protocol which I have no idea about. 2 weeks later the results come back and – what a surprise – there were no lesions (her 2 previous MRI scans showed 2 lesions). Now we are waiting for a referral to local neuro which in turn might reffer us to a neuro ped, specialising in MS – maybe. Or maybe not. As a mother I'm mad. We started the whole thing 5 months ago and we havent seen a neuro! Our GP is a nice guy, but he looks at me like I'm talking Mandarin when I sayabout lack of OB or VEP shoving ON in Barcelona where she was tested for the first time (we were in Spain when she had her first serious attack which bought up possibility of MS). at least he sent us to the local optitians, who checked her and pointed neurology (ON in remission as we got appointment only on December while the ON flared up in mid October). I do understand that MS is not an emergency, and NHS system wants everything be managed by GP, but at present moment I'm furious – if it takes over 5 mo to be able to see any neuro (even if you already have two medical histories to show, pointing out neurology towards MS), then how long it'll take to see a MS specialist? (I believe the nearest will be Birmingham Children, we live in XXXXXXX)? After the flare last year my daughter suffered serious cognitive losses and I'm afraid of the next flare, and without being able to see even a basic neuro… I feel terrible. Truly terrible. So that's my experience from the bottom of NHS. I know, it's not your job to deal with that level, but if your potential patients are endlessly lurking through the endless corridors of NHS while precious time is lost…. Maybe that's worth a discussion? Maybe you have a tip for me, how to jump these NHS walls faster? EMAIL REMOVED


    • Matt Perry, February 03, 2015 08.26
      The prescribing MS specialist in XXXXXXX is a guy called Dr XXXXXXX. Nice guy. His private office is in XXXXXXXXX. You can see him privately for about a XXXXXXXXX quid or so (usually no waiting list). If you've not got insurance, REMOVED sometimes it helps (and is worth the initial consultation fee) to skip out the queue of numpties and just go straight to the main man.

    • Sorry MD – didn't mean to post anything inappropriate. I forget you can't have recommendations for individual docs on here. No harm intended.

    • Dear AnnX
      I have removed your email and details (Please see Rules of Engagement).

      I am sorry you are having such a problem and can really understand your frustration. I am sure we have lots of anxious Mums and Dads reading the Blog as we all want the best for our kids. We (ProfG and Kapoor) have just finished an ON trial where people with suspected MS were on active treatment, with a nerve protector within 2 weeks of their first symptom starting. It shows what a wonderful job Dr Kapoor did and now lets hope his efforts are rewarded.

      One could argue that we should also now be doing DMT studies and see if we can make an impact on conversion to MS.

      This clearly contrasts London from the Provinces, where we have specialist eye hospitals with A& E and outreach systems in place and specialist Neuro Paediatrics too.

      Not being a HumanDoctor I can't advise and ProfG is unlikely to get into any specifics, nor can we tell you who to see, but Matt found someone and that person could be found with abit of searching it may give your GP a name for a refereral. I hope you understand.

      Maybe ProfG can make a generalised comment on how to deal with the system

    • Annx,

      you should complain, complain, complain at every level possible. But probably won't work to try to do it through your GP (they have very little time to deal with each patient). As they say 'the squeakiest wheel gets the most oil'. You should demand to be referred to a paediatric neurologist and complain at the trust where the referral is made – complain to the chief executive and threaten to or go to the press. Your local MP could actually be very effective at getting them to move very quickly believe it or not – speak to them. Don't be nasty about it, just be extremely persistent. Also ask the doctor who got the MRI brain to get a specialist neuroradiology opinion on the MRI and get it compared with any previous you can get your hands on.

  • The medical community needs to face the facts that the way we study MS is a complete disaster. Pharmaceutical companies look at a disease like MS and ask, "I wonder if we have already accidentally cured this disease with a drug we already created for some other disease that didn't work out?"

    It's like your teacher asking for your math homework and you pull out your English notes and say, "Is this it?" No. Then you pull out your history notes and say, "Is this it?" No, big surprise, you did not accidentally complete your math homework without realizing it.

    You will know when you've cured MS because you will have actually figured out what MS does, in specific scientific detail, and you will have created an intervention that prevents that from happening. So academics can do that first part, actually figure out what MS does. This would be great, but they're too busy help big pharma get their history notes out of their backpack. Guess what, history notes aren't going to cure MS.

  • I would think the key to making this work is demonstrating a better/cheaper cure to insurance companies. If academia manages that, then insurance companies will begin to balk at the more expensive less effective treatments. I don't know how well this would work in England, but here in the U.S. that would be my target audience for such findings.

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